I had trouble walking, standing, moving, sleeping, anything. One evening I got down on the floor with my daughter to watch a movie. It ended, she got up and went to bed. She said "come on, daddy, read me a story..." as she left the room. I started to get up and crumpled back on the floor -- my legs couldn't lift me from the ground. It was a combination of searing pain and simply that the muscles seemed to "not work" for lack of a better description. I end up crawling to a chair and lift myself into it. From there I could get up. As I sat there my appreciation of the condition of my father-in-law changed completely. I struggled into her bedroom and read her the story standing up. Because I didn't dare sit down on her bed out of fear I wouldn't be able to get up. I simply didn't want to scare her.
Fast forward to now. No training. Off the meds obviously. My work output plummeted (along with my income as I'm self-employed). No exercise apart from gentle walks. At this point the pain seems to be limited to what I think is the piriformis muscle (i.e., my right butt cheek is killing me). I still haven't stressed anything as it feels like anytime I do it takes forever for the muscle to recover. On bad days I'll take a pain pill or more. Sometimes at night it is a muscle relaxant and pain pill. But I just can't do aikido. Not yet at least.
For me the thing is that there is improvement and by most accounts I should continue to get better as the effects of the med clear my system. I will be back and that is an incredible motivating thing for me. That said I can't *even imagine* how people in constant pain deal with it, especially if the prognosis is more of the same or worse yet. It is a constant stress, constantly tearing you down, constantly with you, dulling everything you try. I see myself in a whole new light as well. I'm not as strong as I thought. Or maybe it is better to say I've learned how little I knew before.
Soooo... What's the point? No, I'm no looking for sympathy -- I'm blessed in that I'm getting better. But I am never saying a *thing* to anyone who experiences chronic pain other than "is there anything I can do to help". No judgement. If you want to talk about "it has to be felt", well, you really need to walk in their shoes for a while to truly appreciate the complexity (physically and emotionally) of these sorts of things.
Now I'm over checking up on my father-in-law a lot more often making sure we help out as much as we can. Even if it hurts me. Because he's hurting more.
I ain't complaining about every day stuff any more... How naive it all seems now.
Sorry for the tangent, but part of this has been really relevant to my life lately.
That sounds like a very difficult situation and I wish the best for you and your family.
By the way, I'm no Doctor so take this with a grain of salt.
Your symptoms sound similar to sciatica, mock sciatica or piriformis syndrome. The piriformis runs over the sciatic nerve bundles that run through the greater and lesser sciatic notch. Sometimes the piriformis reaches a state of hypertonicity and presses the sciatic nerve bundles into the bony notches, causing serious pain, tingling, burning sensations, numbness, etc. A good massage therapist may be able to help you, but I would clear it with your doctor first.
You probably know this already but I am just trying to be helpful. Hope you feel better soon.